Abilify- Stanford Clinic Patients

[junkcrap50]

. And there is the Russian drug bromantane which works by up-regulating expression of the enzymes which create dopamine, though I don't know how effective it is.

Bromantane is very popular in the nootropic community. It seems to work very well for many people. I've been interested in it as a result, but still haven't tried it.

For me personally, when I first got sick w mono, it indeed was Effexor (SNRI) and Florinef (bc of POTS) that took me from bedridden to working full time again (and I maintained that for about 4 years).

Interesting. Effexor too cured my CFS after my first viral infection. Do you still take it and does it still work? I am considering going back on it (new doctor changed it after my 2nd viral infection).

 

[JES]

Interesting. Effexor too cured my CFS after my first viral infection. Do you still take it and does it still work? I am considering going back on it (new doctor changed it after my 2nd viral infection).

Interesting, do you remember what the dosage was? Effexor, from what I was told by my doctor, acts as a dopamine reuptake inhibitor mainly at higher dosages. The challenge for me and I suspect many other patients would be to work up to such a large dosage, as I found even half of the starting dosage very problematic when I trialed it recently (but then again, several years ago I would have tolerated any medication much better).

 

[hmnr asg]

I took cymbalta (SNRI) and it did nothing to help my cfs.

One interesting outcome was that once I got on abilify and then stopped it I ended up with horrible restless leg syndrome. So bad that I had to get back on abilify just so the RLS would stop even though abilify had pooped out for my cfs.

 

[Hip]

Bromantane is very popular in the nootropic community. It seems to work very well for many people. I've been interested in it as a result, but still haven't tried it.

I bought a packet of bromantane several years back, and tried a few single one-off doses at various times, but did not notice much.

However, it may be that it requires a few days before the benefits appear. This study says: "antiasthenic effect of ladasten was seen on day 3 and remained during one month after the withdrawal of therapy".

In Russia bromantane is indicated for the condition of asthenia (bodily fatigue and lack of muscular energy), so it might be useful for ME/CFS.

 

[Hip]

I wonder what dose those who report irritability are taking vs those who don’t, and very importantly those in the group who are also taking an SSRI/SNRI or MAOI antidepressant with Abilify, to see if concomitant use of these shows reduced irritability.

I had weapons grade irritability for many years when I first got ME/CFS, and looked into various possible causes and treatments in this post. At that point in time I was just fumbling around in the dark biochemically, trying to find something that would help, but without much success.

Once I started on very low-dose amisulpride, nearly all of my irritability disappeared.

Abilify is also indicated as a treatment for the severe irritability that can arise in autism, so strange that it should cause irritability in some ME/CFS patients.

N-acetyl-cysteine sometimes helps irritability in autism, so that may be worth experimenting with.


Given that Abilify hits multiple serotonin receptors, that might be the cause of the irritability, since serotonin deficiency is linked to irritability. So something like an SSRI might help.

 

[Hoosierfans]

I had weapons grade irritability for many years when I first got ME/CFS, and looked into various possible causes and treatments in this post. At that point in time I was just fumbling around in the dark biochemically, trying to find something that would help, but without much success.

Once I started on very low-dose amisulpride, nearly all of my irritability disappeared.

Abilify is also indicated as a treatment for the severe irritability that can arise in autism, so strange that it should cause irritability in some ME/CFS patients.

N-acetyl-cysteine sometimes helps irritability in autism, so that may be worth experimenting with.


Given that Abilify hits multiple serotonin receptors, that might be the cause of the irritability, since serotonin deficiency is linked to irritability. So something like an SSRI might help.

@Hip, so you don’t think the irritability comes from the androgenic (sp?) receptors that Abilify hits? I thought that was your theory as to why Abilify causes irritability but Amulsipride does not.

SSRIs are known to cause increased anxiety and agitation for the first several weeks while the body recalibrates, so maybe if Abilify hits multiple serotonin receptors than what is happening is folks are getting start up symptoms just like they (we) do with SSRIs. In that regard I would think adding an SSRI at the same time as Abilify would make things worse in the agitation department.

 

[Hip]

@Hip, so you don’t think the irritability comes from the androgenic (sp?) receptors that Abilify hits? I thought that was your theory as to why Abilify causes irritability but Amulsipride does not.

Irritability is quite a different symptom to overstimulation. You can be highly overstimulated, totally wired, but not feel irritated by anyone.

 

[jaybee00]

One interesting outcome was that once I got on abilify and then stopped it I ended up with horrible restless leg syndrome.

Did you ever have RLS before taking Abilify?

 

[Hoosierfans]

FYI for everyone looking at this thread, there are now two polls for Abilify — both regarding its effectiveness and tolerance / poop out. Please encourage anyone you know who has used Abilify to respond. (I’m not sure how to link threads here, but I know @Hip does...maybe he can insert the links in response to this).

 

[Hip]

The Abilify effectiveness survey is HERE.

The Abilify tolerance / poop out survey is HERE.



This 30 second video clip shows how to insert links in Phoenix Rising posts.

 

[Hutan]

Sure. But the money to fund an RCT has to come from somewhere.

For something like an Abilify RCT you need to pay for doctor time, tests, initial appointments, follow up appointments, medication distribution costs, admin costs, lab appointments and processing. And then what about adverse reactions - do you need separate insurance to cover that..

As you say later in your post, wigglethemouse, there are ways. Patients or their insurance company are already paying for consultations and the drugs. There isn't any particular need for blood tests. You might need to pay for activity monitors. But, given the degree of enthusiasm on this thread, crowdfunding could bring in the required funds. If you are a person far from Stanford, convinced by the anecdotes about this drug and not keen to mess with brain chemistry on your own, then it makes good sense to pay something towards a trial, so that you have better information about the options.

As I said, running such a trial is the responsible thing to do for clinicians who think they have a good treatment.

I just wanted to update everyone on my appointment with Dr Bonilla at the stanford CFS clinic. Abilify worked amazing for me and then it stopped. I took a month long break and restarted and still it did nothing. I tried 0.5, 1 and 2mg and nothing worked anymore. I wanted to see if Dr Bonilla had some kind of solution. Well, he doesn't!

I told him that abilify doesnt work anymore and he seemed a lot more curious why i hadnt made an appointment before (two years had passed since my last appointment). When he finally let me get my point across he said its my fault because i pushed myself when abilify worked and then i crashed. I totally disagree with this. I didnt crash, I know what a crash feels like. I just lost all the benefits I had gained, but I wasnt experiencing PEM. The pill just stops working.

He then said that I should go back on the pill, because "even though you dont feel benefits, its helping you fight inflammation". So that's that.

He also wants to put me back on LDN and he also mentioned using plaquenil at some point in the future.
Also, when I asked for a refill of famvir (which had worked for me before), he said "no".

When I last saw Dr B he was pushing Abilify aggressively. I staved him off at the time because I already take 3-4 medications that *directly* affect the central nervous system, which he was pretty cavalier about. I've been worried that he might drop me as a patient if I don't get onboard the Abilify Train. Do you think that's a possibility?

I'm not sure if he will drop you. Of course I have no way of knowing that. He might nag you the way he did with me. But they absolutely are championing abilify now the way they were doing with antivirals before, so he might not take no for an answer.

I find these reports very concerning. If true, it suggests that Dr Bonilla is so convinced of the efficacy of treatments (including a range of drugs that have a very poor evidence base) that s/he is not open to evidence that suggests otherwise. It also sounds as though Dr Bonilla is a lot more concerned about revenue than patient wellbeing. If I was Stanford, I'd be concerned that this clinic is bringing the university into disrepute.

 

[hmnr asg]

Did you ever have RLS before taking Abilify?

I did and it was always worsened when I was on antidepressants. This time i'm on cymbalta and it didnt flare up and i managed to stay on cymbalta because of that. Getting on abilify and then getting off triggered a horrible RSL that just wouldnt go away. I ended up getting back on it just so the RLS would subside.

 

[BananaMango99]

Ok I just got hold of some. What's the conventional starting dose for ME/CFS?

 

[Badpack]

@BananaMango99 as low as possible. Around 0.1mg/day seems like a good entry point. It has a long half life, so dont up the dose for at least 1 week.

 

[mitoMAN]

I started with 0.1mg but 0.25 is probably fine.
My doctor recommended going up in 0.25mg steps weekly MAXIMUM.

 

[leokitten]

I started with 0.1mg but 0.25 is probably fine.
My doctor recommended going up in 0.25mg steps weekly MAXIMUM.

I agree, 0.1 or 0.25 mg is good starting point from my experience. You might get a response from that but will take 2 weeks to reach steady state. I didn't get a response from 0.25 mg but at 0.5 mg I suddenly got a great response. To be most conservative, since it takes 2 weeks to build and reach steady state, so it can take that long to full know if dosage is appropriate after a 0.25 mg step up.

 

[BananaMango99]

I can't get the tablet that small, it's 10mg. Someone on the facebook group started with 1mg and was ok. I think I'll take the punt on that. The main risk is what, that it's over-stimulating? I felt overstimulated to the point of madness on 300mg moclobemide, so it's a possibility

The only way to make it smaller is via a liquid solution which seems not failsafe itself

 

[leokitten]

The only way to make it smaller is via a liquid solution which seems not failsafe itself

It is failsafe it comes with a dropper that has 0.5 mg increments (and it’s easy to measure 1/2 of that 0.25 mg with your eye)

 

[BananaMango99]

It is failsafe it comes with a dropper that has 0.5 mg increments (and it’s easy to measure 1/2 of that 0.25 mg with your eye)

View attachment 42091

Oh yes if the pharmacist make the solution, but not homemade ie via a tablet, as it's apparently not soluble in water

 

[leokitten]

Oh yes if the pharmacist make the solution, but not homemade as it's apparently not soluble in water.

The pharmacist doesn’t make anything, aripiprazole can come as a 150 ml oral solution bottle that you can get in most any country (with doctors Rx or via reputable online pharmacy). That’s what I have and the dropper I showed you is from the pharmaceutical bottle.

In the US and Europe there are multiple generic manufacturers of the oral solution. Some examples:



They should come with a combo dropper that also has a sealable cap at the top of it (to replace the regular cap).